Sunday eSports: Saving a gamer’s eyesight: The power of community

One 18-year-old gamer from Brisbane may yet have his eyesight saved, thanks to Australia's SC2 community.

Imagine you’re sitting down, enjoying your favourite game, on the lounge, sofa or maybe a nice comfortable computer chair. Everything seems reasonably normal, although there’s something just a little bit off. The corners of the screen are a bit harder to see, and occasionally you have to squint.

It’s like you rolled out of bed, except you’ve been awake for hours. You scrub your eyes, drag the grit out of the side of your eyelid. It gets better, your vision clearer, eyes more relaxed. You’d think the problem was gone, except it never seems to fully go away. Maybe you just didn’t sleep enough last night: the light from the computer screen disrupts sleeping patterns, after all.

We’ve all experienced something similar, feeling a little lethargic in the eyes, needing time to “wake up”, as it were. Some need more time to wake up than most; often that’s just the differences between humans.

Unless you’re 18-year-old Nick McGuffin from Brisbane. He loves his video games, as we all do, and he’s particularly fond of StarCraft 2. McGuffin may not be touring the world vying for glory at international championships just yet, but it’s a dream of his. In other words, he’s just your average, gaming-loving Australian – except his eyes never fully “woke up”.

Along with the potential for an incredibly fast loss of eyesight, the structural change can also cause photophobia and monocular polyopia, otherwise known as “ghost” images

Imagine that over a long period of time, you notice that every time you do wake up, the blur and fog lingers for much longer. Those moments of discomfort, clearing the gunk from your eyes, more frequent.

It never got better for Nick, only worse. “I was driving to work, and noticed poor vision/blurring of lines on the road, and I decided to get my eyes checked at the local optometrist. From there, he said ‘let’s see how things progress over the next few months’. It got worse, and I was sent to another optometrist in a city nearby. He was uncertain, and we left it for another 6 months.”

Nick’s mother Wendy Bertello, like everyone else, first thought it was the games. “Initially it was just diagnosed as lack of long distance vision usage, which the optometrist said was common with people these days as lots worked at close vision on computers, so he recommended him to go outside every day at least, and focus on something in the distance on the horizon and ‘retrain’ his brain to see clearly.”

The training didn’t work though, and after several months Nick’s eyesight continued to degrade. “We got Nick glasses, but this gave him headaches and didn’t appear to make his vision any better so we went back to that optometrist to see if the script was correct. They tested Nick’s eyes and noticed his strongest eye was the right one and his left eye was trying to compete with his right causing severe headaches,” Bertello explained.

It was then that the specialists diagnosed the cause as keratoconus, a rare degenerative disease that causes the front surface of the eye to thin and form a conical shape. Along with the potential for an incredibly fast loss of eyesight, the structural change can also cause photophobia and monocular polyopia, otherwise known as “ghost” images.

One specialist who can treat the disease is the Brisbane-based Dr James McAlister. Unfortunately, even though Nick doesn’t have to fly interstate, there’s a good chance the procedure to treat keratoconus – cross-linking – might fail. “My own experience is that the risk of continued progression after corneal cross linking is 20% for juveniles rather than 5% for adults with moderate progressive keratoconus,” Dr McAlister wrote in a brochure about the disease. On top of that, cross-linking only has a 5% chance of improving Nick’s vision.

If the treatment succeeds, it’ll halt the progression of the disease; any reversal would require stepping into the territory of miracles. Even then there’s a chance that Nick will need a corneal transplant later on, and that’s just in his right eye. If the left continues to degrade, it will need the same treatment.

But because the cross-linking procedure hasn’t advanced past the trial stages, the procedure isn’t covered by Medicare or private-health insurance – and it’s a cost Nick’s family can’t afford right now.

“Our situation is that his father lives overseas and doesn’t want to help out, I have had a knee replacement at 45 due to sporting injuries in earlier life and it has since prevented me returning to work,” Wendy said. “My husband has been working 12 hour days, 6 days a week, trying to cover costs but is a casual employee and as the sugar season has finished in our district (which is the main employer in our area) his hours have been reduced to 4 days a week. He has tried to gain further employment however due to Christmas, nothing is available for him.”

It’s that kind of hopelessness, the inability to protect your family that is absolutely soul-destroying as a parent. The one objective in life, my mother once told me, was to ensure that anyone who came after me had a better life than I did, and it’s something Nick’s mother understands. “I feel terrible that I can’t provide for my son in this time of need as the doctor has said this is something we can’t postpone,” she admitted.

Luckily, Nick’s family wasn’t the only ones who wanted to help. Left with no other choice, Nick decided to make a post on SC2SEA, the hub for all things StarCraft related in Southeast Asia, explaining his situation – and the response was incredible.

Alicia Oliver-Walker, a New Zealand-based commentator for StarCraft 2 and a content editor for pro-gaming team Frenetic Array, helped to marshal those looking to answer the call. “[Nicholas] Russo, the Frenetic Array Team Manager, contacted me to say he would like to donate a signed shirt to the charity, but at that stage nothing had been decided on,” she recalled.

“I had a chat to Nick to see how he would like to proceed, a charity auction or raffle. We decided to go with a charity raffle to appeal to those who wouldn’t be able to bid on a high priced item but instead to have a chance to win with any donation made.”

It wasn’t just players and random spectators who stepped up: peripherals manufacturer Razer contacted Oliver-Walker to donate a set of Star Wars: The Old Republic mouse-pads, retailing at $50 each, and the community also provided signed shirts, free coaching, StarCraft-themed apparel and their own hard-earned cash.

“For the most part, people have been amazing … some people like myself are not financially able to support the cause so have given up their time, spread the word and made donations in the form of prizes instead. We have a very close-knit community who are always supporting our own members. I try never to focus on those who want to bring something like this down, I think it is really important for us to focus on the fact that there are so many amazing people who want Nick to have his operation,” Oliver-Walker added.

The support has been inspiring, even if the end goal is a lot of money for a community comprised mainly of teenagers, underage gamers and struggling students. “Nick didn’t tell us about this until after his first donation came in … I felt terrible that he had to do this but very proud of him at the same time,” Wendy admitted. “We are constantly told how people these days are selfish and don’t want to help others and with people who scam others, this is truly understandable, but this support is beyond my comprehension and we cannot express how honestly thankful we are.”

Around $1000 has already been raised — covering around half of the first operation — although the family has admitted that there is no guarantee their situation will improve, which is almost grotesquely ironic considering how difficult things have been already. Since the middle of last year, for example, Nick has been battling depression after a lack of funds forced him to drop out of university.

While that’s slowly being conquered with the support of Nick’s girlfriend, the after-effects of the procedure are excruciating. “The treatment, although not painful in itself, is supposedly very painful the night after surgery, equitable to childbirth or a bluebottle sting … no mother wants to see their child go through that,” Wendy explained, adding that Nick will require follow-ups in three months, six months and a year’s time.

But if Nick and his family have shown anything so far, it’s that they’re built to survive. And despite a reputation for lobotomised misogynists, incessant trolling and a stereotype threatened by colour, gender, race and a can of Lynx, gamers are sharing what little funds they have to stop Nick from going blind.

That’s a gesture which sings loud and clear above all the recent hatred and drama, and the first chorus may have just begun. There’s several days before the charity draw comes to an end and another fortnight before the first step in a long and painful chapter of Nick’s life. But there’s no doubt that if Nick walks away with a functioning pair of eyes, it isn’t religion or philosophy or even family that he has to thank. It’s the most unlikely saviour of all: gaming.

‘It never got better for Nick, only worse. “I was driving to work, and noticed poor vision/blurring of lines on the road, and I decided to get my eyes checked at the local optometrist. From there, he said ‘let’s see how things progress over the next few months’. It got worse, and I was sent to another optometrist in a city nearby. He was uncertain, and we left it for another 6 months.”’

Sorry but… what?

I went through a somewhat similar ordeal myself; I noticed one eye had worse vision than the other, so I went to a GP, then an optometrist who initially recommended glasses until she actually took an OCT of my eye as a precuation and noticed a blood vessel abnormality, whom then referred me to an eye specialist. Those must be some seriously incompetent optometrists.

The surgery to stop the progression into blindness ended up costing $1500 but luckily medicare paid most of it back + my parents earn average income (all the OCT scans cost $150 each though, and I had several, so total costs would probably be around $3000 considering they also performed an MRI trying to figure out what was wrong, at least they found it and treated it within a few months); I can’t imagine how terrible it would’ve been being a single parent and having a son trying to strive in such a harsh environment so it’s fantastic he got the support he did.

This makes me sick! There is so many inaccuracies with this article. I have had Keratoconus for 7 years and had my crosslinking with Jim McAlister and recently a graft. Crosslinking is uncomfortable for 2-3 days and is most certainly NOT excruciating pain! (I have been in labour twice). Suck it up buddy, it is nothing compared to that! a 9 year old boy went through it for heavens sake!! You get drops to take home, it completely takes away the pain as well as a shield over the eye. Your eye does not squeeze itself out of your skull! WTF?? There is 1 in 1000 people that have this condition and is defiantly not rare. I was a young mother with two kids when I had my crosslinking done and paid for it OURSELVES, with only my husband working! And also recently paid for the $8000 graft that I had with Jim. Keratoconus is not nice but there are defiantly far more people who are suffering with more serious conditions and you should be ashamed of yourselves for having this pity party. Here’s an idea sell the computer and games?? You also do NOT go BLIND from this condition. Pathetic!!!

mcgwiggy:
You also have a 98% success rate. who would go through ‘excruciating’ pain for a 5% chance of it working? This is a scam!!!

Not necessarily the article states its a 5% chance of improving his vision. It’s a near guarantee that the operation will stop deterioration, I think the article is made out to make his case seem alot worse than it really is, I’m sure this poor guy is doing it tough or at least im willing to give him the benefit of the doubt.

However this article definitely makes it out to seem alot worse than it is.

I appreciate that you might have been able to cover the costs of your operation yourself, although surely you would understand that sometimes not everyone is able to cope when faced with hard times. Please don’t denigrate a family’s suffering just because you were able to come through the other side.

Also the procedure is designed to halt the progress; the 5% chance refers to the possibility of eyesight being improved as a result.

Furthermore, keratoconus can cause legal blindness if left unchecked; while I’m sure you might not value the difference between that and total blindness, people whose eyes have degraded to such a degree most certainly do.

I should have specifically said that the cross-linking treatment is new; my apologies.

Also, just over 10,000 people would be statistically affected by keratoconus in Australia (given that the accepted rate is 1 in every 2000, not 1/1000 as an earlier commenter claimed). And given that there are few specialists for the disease, do you not think that qualifies as “rare” ?

Secondly, I don’t understand your complaint about how a gaming community banding together to help out someone in need isn’t “newsworthy”. That seems an astonishingly cold view to take, especially given the last fortnight of controversies about misogyny and the Dead Island nonsense.

I apologise for the comment on the 5%, that does make sense but I do stand by my comment of them being able to come up with the money. Being young parents, I know all about hard times and the importance of SAVING money for times like this. A lot of articles vary in wether it is 1 in 1000, 1 in 2000 or most recent article stating that it is becoming even more common. I have been to 3 specialists from Brisbane and the Gold Coast as well as 2 at the PA hospital and that is in Queensland alone. When I had my graft I was given a list of 5 doctors that they would recommend doing my crosslinking and that doesn’t include the ones that they would prefer me not to go to. You did not do your research Alex Walker,

I appreciate that you might have been able to cover the costs of your operation yourself, although surely you would understand that sometimes not everyone is able to cope when faced with hard times. Please don’t denigrate a family’s suffering just because you were able to come through the other side.

Also the procedure is designed to halt the progress; the 5% chance refers to the possibility of eyesight being improved as a result.

Furthermore, keratoconus can cause legal blindness if left unchecked; while I’m sure you might not value the difference between that and total blindness, people whose eyes have degraded to such a degree most certainly do.

If my parents couldn’t have afforded my surgery, I still had the money to pay for it BUT I’m saving up for an A clarinet so they paid for the diagnosis/treatment, I am not on centrelink either. Do Centrelink give him youth allowance considering their situation? It sounds like they don’t (it more than easily lets you pay for university), but I don’t understand why not, and why he didn’t work as a teenager considering how much it could’ve helped their situation and the fact that he may have known he wanted to go into esports then (a notoriously low paying field).

‘Since the middle of last year, for example, Nick has been battling depression after a lack of funds forced him to drop out of university.’

The fact that he’s already dropped out of uni due to their situation seems awfully ironic considering it was due to a lack of money, so going into esports doesn’t seem like the best thing to do considering how hard it is to form some form of a living within the field.

‘That seems an astonishingly cold view to take, especially given the last fortnight of controversies about misogyny and the Dead Island nonsense.’

What does this have to do with anything in the article?

Edit: Also note that on the other forum he said his seasonal job just finished; how much was he working?

I’m also surprised he said centrelink wouldn’t support him as his parents joint income was above $40,000 but I thought you had to reapply at the beginning of every year?

Keratoconus Australia puts it at 1/2000, so that’s what I went with. And I don’t disagree about the value of saving: but I really don’t think you, or anyone else, is in any place to be making what would be deeply personal and highly offensive remarks about a family’s situation. Do you know these people? Do you know their situation? Are you in any way qualified to be telling them that they have more money than they actually know about?

One of the factors at play here is that Nick began the donation drive by himself – it didn’t start with this article, in case you’re wondering – and he didn’t tell his family until after the first donations were made. So you shouldn’t be ringing them out to dry for this. An 18-year-old kid didn’t know what to do and he reached out for lack of a better idea, and people responded in kind.

You complained that it wasn’t newsworthy, that the donation drive wasn’t worth writing about. This is a regular column about what happens in the local competitive gaming community; do you think this sort of thing is so frequent in Australia/New Zealand that it should be ignored?

Nick has also been looking for work; it’s not like he’s trying to earn money from eSports. He’s a member of the community but he hasn’t thrown away his studies and employment to become a full-time professional.

Unfortunately, Nick’s been recovering from a broken wrist and a torn ligament which has kept him out of his regular seasonal job, and any employment. Things are tough.

rapid101: I’m also surprised he said centrelink wouldn’t support him as his parents joint income was above $40,000 but I thought you had to reapply at the beginning of every year?

It won’t arrive in time. The specialist told Nick that the procedure can’t be delayed any longer; the surgery is booked in for February 1.

There’s also the problem of Nick’s mum currently being on income protection until her specialists – she had a knee replacement last year – can determine if she’s a) capable of returning to work and b) finding a suitable position within the QLD Department of Education – a state which hasn’t exactly rolled out the red carpet for new public servants over the last 12 months.

I should have specifically said that the cross-linking treatment is new; my apologies.

Also, just over 10,000 people would be statistically affected by keratoconus in Australia (given that the accepted rate is 1 in every 2000, not 1/1000 as an earlier commenter claimed). And given that there are few specialists for the disease, do you not think that qualifies as “rare” ?

Secondly, I don’t understand your complaint about how a gaming community banding together to help out someone in need isn’t “newsworthy”. That seems an astonishingly cold view to take, especially given the last fortnight of controversies about misogyny and the Dead Island nonsense.

You should have said this specific treatment is new to *insert person treating him* as the treatment has been around for more than a few years now, when talking about things like this there are people who have to go outside the country for new treatments, again my issue is it seems like the article is being made to sound worse than it really is

.I’m not qualified to make a statement on what is rare my opinion however is that 1 in 2000 is not rare
by definition 1 in 2000 I believe is borderline having said that I have no particularly strong feelings with it being classified “rare”

You’re correct it is a cold view to take, however it is realistic 1 person who likely could thru their own means get treatment is not all that newsworthy sure make an article I don’t really have an issue with it it’s just wierd to me that this gets attention when, Child’s Play Raised a record amount last year, and there’s no news article for it.
My point was more in a statement on gamers do lots of good things all the time, that just go un-noticed and I wonder why this particular good deed is all of a sudden “news worthy” I don’t have an issue with things like this being news articles, it was just a bit of social commentary really I do apologise if I offended/upset you Alex.

Unless he did it out of greed not need, I’m not claiming he did but we should always be vigilant for people trying to pray on our sympathies, I don’t really think that’s the case here but it is still something we should be vigilant of in all cases.

The only charitable perception gamers carry in the wider media in recent times has been a loose and willing quiver of racist, sexist and bigoted insults. Dead Island sums it up the best; there’s an equally distasteful example in the Sunday eSports column I wrote last week.

I’m not upset or offended; one of the advantages of playing Counter-Strike, one of the most abhorrent and pig-like communities ever to infest the internet, I suppose.

But this isn’t about me. It’s about a family whose hit hard times, a kid facing a frightening disease (his specialist told him he’d go blind, which after not knowing why your eyesight isn’t getting better would certainly scare the hell out of him) and a group of strangers who are trying to help any way they can.

I may have come across as exceedingly defensive earlier, and I apologise for that. Your criticism has been wonderful and I’m glad you came forward and pointed out everything you did. I just got a little touchy when the particulars of Nick’s family came into the equation, since his family isn’t here to defend themselves and yet people are seeking to pick apart their lifestyle and income.

I’ve never been a fan of telling someone I’ve never met what their situation is really like. It’s arrogant and a trait I’ve been battling as a child; it’s unbecoming. So again, if I went a little hard, I really shouldn’t have.

But I’m not going to apologise for shining a spotlight on something that deserves it. And at the end of the day, if everyone walks away a little more aware about keratoconus and a little happier knowing that a community did what it could – it’s worth it.

I really do wonder are the above negative comments necessary.. it’s a gaming community, and it’s newsworthy for such community imo. people judging the financial situation of he and his parents? no one but Judge Judy can judge anyone. unless you know these people personally, what right have you got?
so he got the smarts enough to start his own fundraising, good on him. I was about to do the same for my cat until i was told it was uncurable.

best of luck with it dude, no doubt you are reading this article and left thinking “wtf community is this?” – ignore the haters.